Life on Edge

There are times I think this blog could be re-titled Life on the Edge, for I can’t imagine feeling more on edge than I do now.  I often hear people talking about how this thing or that thing pushed them right up to the edge, but is it really the edge or could we push further out if we had a great need?
I know with my MS, I am taking a drug, Tysabri, and I have already been taking the drug longer than 95% of patients.  There is no long term study saying what effects taking it over time are likely to cause because those of us who have taken it this long are the only population from which to draw conclusions.  We are the vanguard.  Still, it seems to be working, but I do wonder what it does to my body and my immune system.  I see reports of people going off the drug having more relapses, and I wonder how addicted I and my immune system are. This isn’t where I feel most on edge in my life.  It is but a contributor.
Over the weekend, I took care of our 3 kids a lot.  When 2 of the 3 kids have sleep issues, it makes for some long days beginning at 6 and ending when the dogs are walked after the last kid is in bed for the night (we wish).   Some time around 10, I get to declare victory most days with some days later like Saturday where I was still trying to put a screaming daughter back to bed at 10:25.
I had to chuckle to myself when my wife took our 2 oldest down the street for a couple hours on Sunday, and then came back with the “I gave you a rest period” attitude.  It’s hard knowing she didn’t feel well, and our kids are difficult so taking them down the street was a help.  It’s just most people probably don’t consider being left with a medically fragile 1 year old who needs attention a “break.”  I guess I should take it as a compliment meaning she thinks enough of my parenting to think “just one” should be easy for me.  Coming home with our two kids, one of whom was way overdue for some ADHD meds, led to another very frustrating night.
Through it all, I tell myself these are the moments which make me a dad.  It’s not just the hugs and “I love you.”  It’s also the moments where I am at whit’s end, where I don’t know how to get where I need to be or how to get my kids to where they need to be.  It’s the moments of pure frustration suspecting deep down inside the tired, raging kid before me stands another soul living on the edge pushing to see if they will fall.
I found myself telling my son what I have told him many times, “I have nothing more valuable to offer than my time and affection.  I care for you and I always will even when you make it difficult.”  That is the only rope I have to offer to the souls on edge.
It was an emotionally draining weekend leaving me constantly second guessing myself as I walk around the block with the dogs.  As I walked around last night, I was fighting the tears.  I don’t want to threaten to take away my sons toys.  I don’t want to scare him just to get him to stop throwing things at me, spitting at me, and hitting me.  I feel like crap making my kids cry for a third night in a row.  I had gone beyond emotionally tired.  I was “soul tired.”
(Continued on following page for the story of the “repeat game”)
I hope what I remember the most from the night is the look on son’s face as he tried ye old childhood tactic to irritate by repeating everything said in a high pitched, deliberately annoying voice.
O, take your medicine.
“O, take your medicine” (sing song) 
Remember, daddy was a kid once too and knows the answer to the repeat game.
“Remember, daddy was a kid once too and knows the answer to the repeat game” (sing song) 
O is very lucky because daddy could say O is not very wise to answer daddy with smelly breath.
” O is very lucky because daddy could say O is not very wise to answer daddy with smelly breath.” (Sing song)
Instead I will say, “Daddy loves O very much.”
“Instead I will say, ‘Daddy loves O very much.'” (much less mocking tone)
I love O very much.
“I love O very much.” (no sing song)
I love that this got through to him, like he realized I wasn’t competing with him.  I know he could see on my face how annoyed I was because I am not a good actor, but for just one minute we weren’t on opposite sides.  Now I will grant this moment passed like clouds on a windy day cutting off the moon from our sight, but for that one minute amongst more than 70 minutes of emotionally draining fussiness, I saw my son see me differently. 
I’ll keep that exchange in my memory to at least store next to the one of me going up to ask my desperately seeking sleep wife for “help” in what felt like an admission of failure to help any involved.  Such is life on the edge. Some times we need a little help to successfully walk the razor thin line and avoid falling over the edge.

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